Sunday, April 29, 2012

In the NICU, the whole team of doctors goes and visits each patient every morning, they go over the case, any new findings, and come up with a plan for the day. I unfortunately missed most of it when they were going over C because I had gone upstairs to pack up my stuff and get discharged. The upshot was that they had put in for some additional consults; genetics and opthalmology, his repeat CBC showed that his hematocrit was down so they were going to start weaning him from IV fluids and I could start nursing when he was hungry, yippee! The head neonatologist also said that he wasn't convinced it was the hematocrit that caused the incident the night before, he generally didn't think that there was anything wrong with C, it was just a random isolated incident.

So we got to nurse again around noon, which lasted until 12:30 or so, then I headed out to get lunch. In the meantime it was a zoo here! The geneticists came around to check C out, and based on a cluster of observations (ACC, he has a small chin, triangular toenails, long toes, somewhat funky ears) they wanted to do some genome DNA testing to determine if there is an insertion or deletion in his genome somewhere. They also felt that based on the cluster of "symptoms" he has, it was worth doing an EKG to get a baseline and rule out any issues there, as the heart is often affected to some degree if there is some kind of syndrome. So that was added to the list of tests as well! phew!

We said fine to the testing, but honestly I don't think it's likely to change anything we do. More for interest's sake than anything else.

After the geneticists, and once again right when C was scheduled to be taken down for his MRI (finally!), the neurologist showed up again to do a repeat exam. No changes, so still a good report there.

DH and I ate lunch while the MRI was completed. The rest of the afternoon was fairly boring, although we did find out the results of the kidney ultrasound, which were that there was significantly less dilation than had been seen in utero, classifed as mild now instead of moderate. They still want to do some followup tests in a month or so, but felt that at this point there is now no need for prophylactic antibiotices (to avoid UTIs which can be common if the dilation were to have remained moderate), so it seemed like getting to actually pee outside the womb was a good thing.

So C nursed at noon, then again at 2:30. In order to get him off the IV, we needed to start weighing him when he nursed to make sure he was getting adequate intake. So for the next session he was weighed pre and post, and took 22mL. They were looking for him to take 40mL + (1.5oz approx) every three hours, and then they could turn off his IV.

I went home for the first time, to see A&T and pick up a few things. It was nice to see them, and they were very happy to see me. Well, A was, T was watching TV with his uncle which meant he essentially ignored me :)

Nursed C again when I returned to the hospital, amazingly he hadn't woken up while I was gone, I was expecting that he'd need to be fed at least one bottled, this time he took 26mL.

Day 3, Friday:

Three nursing sessions in the night, 40mL, 40mL and 48mL, so we could be off the IV! That was confirmed during am rounds. Which I missed once again as I was out having my breakfast, and they did the kids out of order because one of the nurses wasn't available. Sigh. We got re-updated on the kidney ultrasound results, informed that the opthalmologist and EKG were to be done that day, and that they were a little concerned about C's jaundice.

Not much of note happened in the am, just some nursing and sleeping. We still hadn't heard anything back on the MRI which we were getting antsy about! Oh, and C's bilirubin levels had come back and had jumped from a 9.8 on Weds to a 16.8, so they decided that phototherapy was a good idea, and also mentioned that the high bilirubin could be causing C to be so sleepy. (I think at this point he'd been "awake" for a grand total of about 1.5 hours). So the plan was for me to nurse him, then we'd start the phototherapy right after that. I left the room a couple of times while C was sleeping to go have lunch, we are not allowed to eat in the NICU rooms, but the lovely hospital lunch I had ordered hadn't arrived yet. I was *starving*! The boys and DH showed up at around two, not long after I finished nursing and C was put into his little spaceship. (In fact what I was doing at the time was lying down on the cot they have and inserting a suppository for my hemmorhoids LOL. Fortunately Mark was able to hold them off from coming behind the curtain while I finished up, not something I really wanted them to see - boy, the questions!! :))

They were extremely interested in all the stuff in the room - they loved the shades with chains to pull them up and down, very interested in all the buttons, T especially loved the handwashing sink which had footpedals to turn the water on. I took them out to share my lunch with me which had finally come, and while we were gone the next hoard of doctors showed up - amazing how all the specialists manage to come at the same time! Another neuro exam (normal again), the ekg tech, and the opthalmologist all at once! We would get the ekg results later, the opthalmologist said that his eyes looked structurally normal, the only abnormalities he could see were some very small "cataracts" at the outside of his lenses that he thought would likely not affect vision in the least, and some hemmorhaging on the retinas. We thought that could be related to birth trauma, and he actually came back in a few minutes later to tell us about a paper he had found where all newborns at a hospital were examined, and about a third had retinal hemmorhaging - 75% of vacuum assisted births, 30% of vaginal, and 7% in C section births. Strongly supporting the idea that this was nothing to worry about. (he had us a little concerned by the way he prefaced telling us the results, that sometimes things were noted on exams that could be a bit scary sounding...!). So we took that as generally positive news as well - but yet another followup!

After all that hustle and bustle, the nurse suggested I pump and we bottle feed C so that he could spend as much time as possible under the lights. So I did (got 100mL this time!!!!!) and then while C was napping under the lights, the boys, DH and I went out for dinner. During dinner, two different neurologists called to tell us about the MRI results - GOOD NEWS! They did not find any additional abnormalities, just the missing corpus callosum. And in fact they did see a few fibers crossing between the two hemispheres, that were apparently what should have turned into the CC but didn't. So they were pleased to see that as well, because they felt that it was better that the CC just didn't develop, vs. having developed but then been destroyed somehow.

DH took the boys home after dinner, and I went and hung out with C. He was weighed again (the NICU isolette actually had a built in scale, so we could weigh him directly in there - you lift the baby up and tare, then put him down and weigh, then lift up again, I guess for confirmation. Pretty cool) and came in at 7lb6oz, so down only two from birth! I guess the combo of IV hydration + my milk already being in meant that he was already gaining weight again).

When I got back to the room there was a doc there, and she told me that the EKG was overall normal, but that there is a very small hole in between the two ventricles, called a VSD. She told me that it's something that a lot of kids have, and it normally closes on its own over time. So yet another followup appointment!

I had a couple of friends come over for the evening to keep me company, which was nice, as C had to be under the lights. I did take him out to nurse him, so they got to hold him for a few minutes. They noticed that when they were holding him and I was speaking he was very still and quiet, but when it was the two of them talking he was more fidgety. Interesting!

The nurse fed C his bottles, so I got a nice six hour stretch of sleep that night.

Day 4: Saturday

Our hurdles today were a car seat test (normally just required for smaller infants, but because of the apnea episode, they wanted to check that he didn't have any trouble breathing in his carseat. The nurse actually really liked his seat (the Br!tax Companion) because it did not put him at an angle that would lend his head to falling forward. And he passed the test with flying colors.

Last hurdle was another bilirubin check at noon. They were looking for it to have gone down from the 16.8 the day before. It had, but barely! Just 15.8. They did say it was okay for us to go home, and just went over the warning signs of severe jaundice with me. (Lethargy, no peeing or pooping for 8 hours, lack of interest in food). Told me that it wasn't okay to wait for our first pedi appointment until Tuesday, that we should either go today or Monday.

The rest of the family arrive at about 1:30, and we were all ready to go - of course as usual it seemed to take *forever* for the paperwork etc. to get done, so we didn't get out of there until 3:30, when we were all feeling quite antsy.

So all in all, quite a few adventures, but really, mostly good news aside from a few minor issues that probably happen in lots of kids but no-one knows because they're never checked. But here are all our followups:

So nice to be home! C is nursing really well, every 2-3 hours, and I feel like he's doing a pretty good job of emptying me on at least one side, so based on how much I was pumping, that means he's getting probably around 50mL per session, which is great. I have been weighing his diapers, he had 8 diapers today, all of which had pee and poop, and they weighed an average of 47.5g (confirming the ~50mL per nursing session, as generally what comes in goes back out).

Saturday, April 28, 2012

Our post-birth hospital stay has been somewhat more eventful than with the other two boys.

Day 0:

Little C was born at 4:10am on Tuesday 7lb8oz, 20.5". We weren't able to do skin to skin immediately because the cord was wrapped around his neck, but he was given to me pretty quickly. We made a first attempt at nursing sometime between 5 and 6, after they'd finished sewing me up and I'd delivered the placenta. It went okay, we were able to get a decent latch, but he didn't suck all that much.

After that, he slept and slept and slept. The pediatrician came by to do a newborn check, and he passed with flying colors. But, in the midst of her exam, he threw up a whole bunch of clotted greenish brown stuff. Thank goodness she was in the room at the time, it would have freaked me out! They took the clothes away for some testing, and found that it was blood, most likely ingested during delivery. Also a likely cause for him not wanting to eat much, as his stomach was already full! That was probably around 10 in the morning.

The neurologist team (attending, fellow, resident, med student was my impression) came by to examine him, and all the reflexes and things they checked were also normal. Also good news :)

A few checks of his temperature were on the low side, so we did some skin to skin, and after that didn't work, he had to go under the warming lights. As he was not eating often (we did attempt a few times, but he was just fast asleep), the nurse suggested that I pump and we try and syringe feed him. So I did, and amazingly got about 10mL out of each side! I had no idea there was that much colostrum in there; everything you read says it's very small amounts. They checked his temp, and it was low for the fourth time, which they found concerning. Particularly because I was GBS positive and did not get the full dose of antibiotics, they wanted to be proactive in treatment, so decided to start IV antibiotics. Apparently in infants their temperature goes down with an infection rather than up, who knew! We syringe fed him while they were putting the IV in, which really helped calm him down (although he really was a champ through the ordeal, barely made a squeak!). They also took blood to do a bacterial culture, complete blood count (CBC) and blood sugar (which was low). He took a total of about 8mL. He finally woke up again around 11:30pm and nursed reasonably well. CBC came back with low platelets but otherwise normal.

(funny, I'm already having trouble remembering some of the sequence of events!)

Day 1, Wednesday:

Started out relatively uneventful. We syringe fed C again at around 6am as he still hadn't woken up again, took ~6mL. FINALLY at noon he seemed hungry, so I nursed him. We also had the kidney ultrasound scheduled at 1pm, so it was perfect timing. Of course, when it rains it pours, and right before the nurses and DH were taking C to the ultrasound, the neurologist showed up to examine C. He also didn't find anything that concerned him. More yay.

DH said that C was actually awake most of the way down to the ultrasound, but nice and cooperative, and they were able to get the images they needed. Unlike in the OB office, you don't get your own monitor to watch, and the u/s techs aren't supposed to tell you anything, so all he managed to get was that the one kidney was measured at 4.73cm. (I had no idea kidneys were so relatively big!) Didn't see them measuring the dilation at all. So that test was finally checked off the list.

After that, C nursed nicely from 2:30-3:30 (with Uncles J and K visiting, that was mildly awkward for me, lol), 4:50-5, 6:30-6:40. At that point I wanted to take a shower, so I sent him off to the nursery. DH was home with the other boys, and I didn't feel comfortable leaving Cam alone in the room (the bathroom was right there, but still I couldn't necessarily hear him if he started crying, or hear if someone else came into the room). When I was done in the shower I popped over to the nursery to get him, and found that they were in the middle of his antibiotic infusion. He was acting hungry again, so I nursed him from 8:30-8:40 or thereabouts. Afterwards he needed to be weighed, so the nurse took him and got that accomplished. (7lb1oz, so a drop of about 5%, not too bad).

When she was dressing him again, all of a sudden he turned a funny color. She mentioned it, I agreed, and asked if he was breathing. She responded, "NO", and immediately picked him up and went to get oxygen. She sent me to get another nurse, fortunately there was a nurse and a pediatric resident right outside the nursery door. DH was asking later, why did she send me to get help rather than pressing a button or something to call people - my friends suggested maybe she just didn't want me to see anything further! By the time I got back in there with the other two he was looking pinker, but still taking very shallow breaths. Within another 30 sec to a minute he was back to normal again. Thank *goodness* it happened with the nurse right there!

They then paged the neonatologist on call, who was there within two minutes. He took a brief case history, and told me he would talk to the NICU team to decide where C should go, because clearly it wasn't safe at that point for him to be in the room with me in case another incident occurred while I was sleeping. He thought that C would probably go to the "special care nursery" with full time monitoring by a nurse, but when he returned he said that given the ACC (agenesis of the corpus callosum), and the fact that his blood sugars and temps had been low, they would feel more comfortable with us going to the NICU.

While they got him prepped, I went back to the room to grab some stuff and to call DH and let him know what was going on. I couldn't get it out without sobbing; once that started I made sure to let him know the most important thing - C was OK! I can only imagine how scary it must have been for DH, getting a call from me where I started to tell him about C and then burst into tears! I eventually managed to get it all out. It really was absolutely terrifying seeing C go that funny color and realize that he wasn't breathing.

When we got down to the NICU they immediately wanted to run some more tests, which meant more heel pricks for poor little C. Another CBC, a chemistry panel to check on kidney and urine function, and another blood sugar.

The CBC results showed a high hematocrit (red blood cell marker), so the attending wanted to start Cam on IV fluids (nutrition and hydration) - the thought was that the excess red blood cells could be making the blood thicker, harder to get where it needed to go, which could explain the sleepiness, low blood sugar, low temps, and potentially the apnea. It was nice that the IV line was already in from the antibiotics, so they could just start pushing fluids. And then we finally both got to go to bed! Actually not true, I pumped again (40mL, around 1.3oz), THEN got to go to bed. But because he wasn't nursing I got a decent six hours sleep before I got up to pump again (up to 2oz). I already felt like my milk was coming in so I wasn't worried about my supply!

Friday, April 27, 2012

I feel like things got started at my doctor's appointment Monday morning. We had a biophysical profile done, which Truffle passed with flying colors - it sounds like the hardest thing for a lot of babies is the practice breathing, which he had been doing at every u/s since 31 weeks, so we got those points almost immediately. Kidneys were slightly more dilated, but still not affecting the structure, so the doc saw no need to move up the planned induction date (Monday 4/30). After that I saw my doc, we talked about what the plan for induction would be, and she wanted to check my cervix to give us an idea of how that might go. At first she said, 'closed, 50% effaced, and soft'. Then she shoved her finger in and said, "OK, 1cm". And that, my friends, was the beginning of the end :)

When I got home after that, I hung out on the couch for a while playing a phone game, and noticed a few contractions somewhat more uncomfortable than I had been used to. I started timing them, but they were pretty inconsistent - some were five min apart, some fifteen. Got up after a while to do some stuff around the house and they went away. I continued to feel them intermittently during the day, mostly while sitting down, not so much while up and about.

In the evening, DH and I finished putting up the valances in Truffle's room, and then I cleared out all the boxes and other junk that was still in there. After that I went downstairs and we started doing dishes and cleaning up. A bit later than I had wanted to get to bed, but that's about par for the course. I had been feeling some contractions here and there, but when I timed them they were still all over the place. When we were almost done I was standing in the kitchen and felt a sharp pain in my cervix, which made me go "oooooooh", and then a big gush! Classic! If I hadn't been wearing a pad from the cervical exam there very well could have been a puddle on the floor. It was enough to completely soak the maxi pad, as well as my undies, and a bit got on my pants. Time was approximately 12:35am.

Well, that did it. I immediatly started having contractions, timeable, lasting about 20 sec each with 1:45 in between. I knew we needed to get to the hospital in relatively short order to get the antibiotics started for the GBS - plus we were hoping not to cut things quite as close as we had with Timmy.

Called my mom first to have her come over to stay with the kids, then my sis, who had wanted to be in the room when Truffle was born. Unfortunately she had a raging sore throat and knew she had a cold coming on so not a good idea. Made us both sad, I was looking forward to sharing the experience with her. Finally, I called the baby hotline and let them know my water had broken, and they agreed we should come on in.

We got our toiletries together, packed the last few things we needed, got lunch ready for the kids to take to school the next day, walked my mom through everything she would need to know, and were in the car at 1:38. Contractions were still 20-30sec long and 1:45 apart. (So the start of one ctx was 1:45 after the end of the previous one). I was still able to easily walk and talk through them.

The car ride was much more calm than when T was born, when I was into transition. I was texting and posting a couple of messages in between contractions, I did have to start to close my eyes and consciously relax through them, they had lengthened slightly to 30 sec, and about a minute thirty in between. (contraction timer apps are so cool, especially to a data freak like me!) We arrived at the hospital at 1:59am.

(Side note - I guess I was probably right when I was in labor with T that my ctx were 20-30 sec long and 2-3 min apart when I started really contracting. I always wondered based on how quickly things went after that if I had mis-timed them, as I was just counting in my head. Really does go to show that they don't always NEED to be a minute long to be doing something!)

Wednesday, April 25, 2012

Tuesday, April 24, 2012

dh and i were doing dishes and getting things tidied at about 1235, when all of a sudden i felt a sharpish pain in my cervix, i said, "ooooh", and next thing i knew, a big gush of fluid? fortunately i was wearing a pad as my doc had done a cervical exam in the am, andhelped me go from closed to 1cm. pants still got wet tbough. anyway, ctx since then have been about 1:45 apart, lasting 20-30 sec. so we"re on our way to the hospital. expect truffle will be making his appearance in the not to distant future :-)

Friday, April 20, 2012

Well, who would have thought, three short months ago, that I would have made it past my due date? I certainly didn't. But yet here we are. 40w2d today, and no signs of a baby being imminent.

I've gone through a lot of emotions since we found out baby Truffle is missing his corpus callosum. Three weeks ago, people were asking me if I was excited to meet him and I found that I couldn't honestly answer yes. Just too many unknowns, what-ifs, thoughts about how different our lives may be from what we had hoped / imagined.

But now that we're here, at the end, I find that I am able to let all those worries go - and I'm just looking forward to meeting our last little boy. Looking forward to labor, delivery, getting to hold and nurse him for the first time, and SO much looking forward to introducing truffle to his brothers. They are on pins and needles waiting for his arrival.

Tuesday, April 03, 2012

I think for many of us who are/have suffered from hypothalamic amenorrhea, even if we didn't have an eating disorder per se, we certainly had disordered eating. Restricting to a certain (too low) number of calories, avoiding fats, eating an extreme amount of fiber - all behaviours that we have been told are "healthy", but taken to an extreme definitely become unhealthy and detrimental to not only our fertility, but in many cases our lives in general.

One thing that has been a common theme in the posts from women who have recovered from HA on the fertilthoughts forum, is how much more enjoyable their lives are when there isn't an unhealthy compulsion to get to the gym *every* day no matter what, how much freer they feel when allowing themselves to enjoy eating and not worry about every single extra calorie that goes in.

And also, how everyone worries that their weight will balloon out of control and they'll go from one end of the spectrum to the other. It doesn't happen - our bodies have a happy weight, and even when you eat a lot more than you're used to, it seems to somehow settle there - and at that happy weight, things like hair, nails, sex drive, and fertility are all markedly improved.

This article provides a lot of food for thought - even if some of the references to an eating disorder don't fit, there is much in there that rings true for me. Worth a read!

About Me

Thought I would "get healthy" in preparation for having a baby. Lost 20lbs to a BMI of around 20 in May-Jun '04. Went off the pill right after that, and surprise surprise, didn't even get my period. Diagnosed with hypothalamic amenorrhea. Gained some weight, cut exercise, didn't have anyone else with HA to ask questions of, so ended up moving to injectables, 4 BFN cycles. Surprise natural pregnancy while waiting to do IVF (and having gained those 20lbs back, cut my exercise 50%). DS#1 born 08/2006. Cycled fairly normally 1 year later, DS#2 born 09/2008. Cycles returned 10 months later. M/c 06/2010, then DS#3 born 04/2012 through IVF.